Supporting yourself and your family

Starting school is an important milestone in any child and family’s life. For families of children with developmental delay or disability, transition to school requires additional thought, time, planning and support to make the process as smooth and as positive as possible.

Developmental delay is the term used when a young child is slower to reach milestones than other children of the same age. The delay may be in the way a child communicates, moves, thinks and learns, and/or behaves with others.

Professionals usually only use the term "developmental delay" when the cause of the delay has not been identified.

Children with developmental delay continue to learn throughout life, but they take longer to develop new skills and may learn in different ways. For example, most children can learn skills quickly and by watching others, whereas children with developmental delay may need to be taught skills more explicitly. See also intellectual disability.

Supporting yourself

There are many positive aspects to commencing school.

For some families, enrolling their child in one educational setting five days per week may reduce some of the juggling of different appointment times, early childhood settings and financial considerations.

For some children, the greater consistency and structure of a school setting may have benefits for their learning and routine.

The transition to school process may go relatively smoothly for some families, however for others, the changes associated can bring a source of increased stress.

Families play a crucial role in their child’s development, preparation for school, and their ongoing learning. However, you need not feel that all responsibility is on you to “get your child ready” for school or that you need to do everything at once.

The additional responsibilities and energy required as a carer for your family when your child has a disability or developmental delay means that maintaining your own health is vital, for your well-being as well as your child’s.

Identifying people and sources of support for your family to call on, can help to maintain your health and well-being.

Support from your family and friends

Some parents will find that they are able to draw on their relationships with close family and friends for support at this time.

Often one parent will have had more direct involvement in their child’s early childhood intervention (ECI) program and have taken a more active role in looking at the various school options.

Talking through the options with a partner and/or a supportive friend or relative can:

provide another perspective

help you feel clearer about your priorities

allow the responsibility of decision-making to be shared

Where possible, this person could attend meetings with you to provide moral and practical support. Asking a trusted person to be an “extra set of ears and eyes” and take notes, can help relieve the pressure on you to remember everything that is said at meetings.

Parent-to-parent support

“The networking with each other (in a parent/carer support group), talking and getting things off my chest and learning from others’ experiences really helped.”

Mary, carer of Katie

It is common for parents to feel anxious as well as excited about their child starting school. Many parents say that speaking with other parents and carers of children with similar needs provides practical and emotional support.

Some early childhood intervention (ECI) organisations offer information sessions or school readiness group programs which may provide opportunities to connect with other families.

You could also ask your ECI professional to put you in contact with another family, who have a child with similar needs, who has already had experience with starting school.

“Parent support has been the most helpful thing I have experienced.”

Jane, mother of Bethany

Things that may help to maintain your health and well-being

regular breaks away from family responsibilities

interests outside the family

contact with other adults

regular physical exercise

healthy diet

help with home responsibilities (e.g. a cleaner, lawn mowing service)

talking with your general practitioner (GP) and considering a referral to a counsellor or psychologist. The National Carer Counselling Program may also be able to provide short term counselling support

What have I found has helped during stressful times in the past?
(e.g. watching a movie, talking with a friend, going for a walk, getting take away food for dinner)

Who can I call on?
(e.g. a trusted friend who is happy to listen, respite for a break, home care for cleaning help)

How could I ask others for the type of help I need?
“I just feel I need to offload a bit, don’t feel you need to give any advice, I really appreciate the way you listen” or “is there a good time I could chat to you?”

What steps might I need to take to put some stress-relieving activities in place?
(e.g. respite, asking people close to me for the type of help I need, setting up a regular time for a break)

Supporting siblings

Taking care of other children in the family

Parenting can be stressful, particularly with the extra demands in having a child with a disability.

Different family members will respond in their own way (to their emotions) and any stress in the family.

Siblings (brothers/sisters) of a child with a disability often have more complicated home lives or are exposed to stress more frequently than many children of the same age.

Research about siblings of children with disabilities indicates that if they have appropriate support they can develop a range of positive qualities such as: resilience, compassion, and understanding of difference.

Siblings may feel a wide range of emotions in response to having a brother or sister with additional needs including:

confusion about disability

guilt

grief

fear

anger

jealousy

resentment

embarrassment

As a parent you may recognise that your other children need support, but it may be difficult to know how to respond to their feelings and questions. When you are dealing with your own strong emotions and learning about your child’s disability, this can be even harder.

"It was hard especially at the beginning to know how to deal with what my daughter (without a disability) was feeling when my own feelings were so 'raw'. Sometimes I just wished she would understand and be more patient with her little brother, but then she was only little too. It was also hard because my husband and I had very different ideas on how we should handle things. It was helpful to speak with a counsellor when things were tough to help us talk through problems."

Julie, mother of Chloe (8) and Brett (5)

How you can support your other children

treat children as individuals

recognise and praise their strengths to build their sense of self and self-esteem

ensure they have opportunities to develop their own identity, interests and friendships outside of home

Think about:

how can I make sure my child has an opportunity to make and spend time with their own friends if they want to?

would my child like to become involved in some community activities (e.g. sport, music, drama, cubs, brownies)

would they want to do this with/without their sibling with a disability?

talking and listening

Provide regular opportunities for your children without a disability to talk about their feelings and any questions or concerns they may have.

These may include:

need for accurate information about their brother or sister’s disability

feeling they get less attention from parents

perceived pressure to be perfect

no outlet for their emotions

additional responsibilities

social difficulties

There may be other trusted adults with whom your children may wish to share their emotions (e.g. aunts, uncles, family friends, grandparents).

"I found that my younger son really needed a chance to say whatever it was he felt in relation to his older brother (with global developmental delay) even when it was negative. I had to help him find a place where he could express himself. Over time, we were able to help our older son to say what frustrated or worried him while still remaining respectful of his brother."

Kamli, mother of Abdul (4) and Ali (6)

Think about:

how comfortable is my child with talking about their brother or sister’s disability?

would it help to talk at home about how they might like to answer any questions from other children about their brother or sister’s disability?

would it help to schedule individual or one-on-one time with other children to reinforce their sense of value and place in the family?

make decisions about school options to suit the whole family

When families choose a school for their child with a disability, it is important to consider the possible impacts of your decision on your whole family, and in particular upon any siblings.

Whether your children attend the same school, or different schools, letting their teacher know they have a sibling with a disability is important. If the teacher is aware of what is happening at home (for example, disrupted sleep or inability to sometimes complete homework) they may be more understanding of your children’s needs.

Think about:

is the school we are considering suitable for any other child/children in our family?

would my children like to invite friends from school to our home?

And remember...siblings are still children.

Think about:

how can I ensure my child does not have too many additional responsibilities in relation to their sibling with a disability?

how can I make sure that they have choices about how involved they would like to be?

Signs your child may benefit from additional support

If your child:

expresses strong emotions over a period of time

shows attention seeking behaviour at school and/or home

withdraws from usual activities and interactions

If you feel your child may benefit from support some resources include:

school counsellor (a referral can be arranged through the school principal)

siblings support groups

fun activities designed especially for siblings of children with additional needs

online sibling networks

Links

Websites for siblings

Siblings
A website for primary school aged siblings. Includes games, information and space for siblings to share thoughts and hear how other siblings feel.

Young Carers NSW
A project of Carers in NSW, which aims to make a positive difference to the lives of children and young people who may help to support a family member who has a disability (or other needs). This includes a “young carers’ club” where members can chat and get news relating to young carers.

Websites, information and videos about supporting siblings for parents

Raising children network
Raising Children Network is a resource for Australian parents, taking you from pregnancy to newborns to teenagers. This resource offers evidence-based content and includes topics about raising children and looking after yourself as a parent.

SiblingsA website for primary school aged siblings. Includes games, information and space for siblings to share thoughts and hear how other siblings feel.

Advocacy skills

What is advocacy?

Advocacy is:

speaking, acting, or writing on behalf of a person who may not be able to do so for themselves

promoting, protecting or defending the best interests of the person

Parents and carers are usually the first and most important advocates for their children. As a parent advocate, you can uphold the rights of your child with a disability. For example, advocating to make sure your child’s right for the school curriculum to be individualised is upheld.

Why would I need to advocate for my child?

as a parent, you know your child better than anyone and will be involved in your child’s life for the long term. You are therefore best placed to represent their interests

you will have thought about what is important to your family in terms of your child’s education and inclusion in his or her community (also known as your “vision” for your child) and it is important to share this with others involved in your child’s life (see developing a vision for your child)

different people involved in your child’s education will have varying levels of understanding of your child’s strengths and needs. You play an important role in educating people about things they may need to know about your child. For example, you may need to advocate about what works best for your child during transition to school, or when your child starts in a new class or with a new teacher within the school

provide positive feedback to people working with your child when something goes well

Who can help me to advocate?

Some parents find it helpful to take along a friend or other support person to meetings in order to hear what is being said and get across any important messages you may want to share (see also preparing for transition meetings).

There are a number of organisations that can provide support, training and telephone advice to you about how to best advocate for a family member who has a disability:

Newsletter

Keep up to date on ECIA NSW/ACT programs, initiatives and events. Enter your e-mail and subscribe to our newsletter.

Success! You've been added to our email list.

About Our Company

Starting school is an important milestone in any child and family’s life. For families of children with developmental delay or disability, transition to school requires additional thought, time, planning and support to make the process as smooth and positive as possible.